Monday, February 1, 2016

What It Really Takes

I haven’t posted in awhile. It’s been hard to write. I’m still recovering from fracturing my back in December. Fun, right? So that’s what I decided to write about. What recovery is like for people like me. People with chronic illnesses. Autoimmune diseases. Chronic pain.

First, I want to say that my intent for starting this blog was never to garner pity. I don’t want anyone to read it and think “I’m so sorry.”or “That’s so sad.”. Especially those of you who are friends but have not known me throughout this journey or who didn’t realize the true nature of my disease. It’s OK that you didn’t know. I’m fine with it; with this. I started this blog to get information out there. To raise awareness for these illnesses because awareness equals research and Sjogren’s, unfortunately, has very little.

Mostly, I did this to help others like me who feel like they don’t have a voice and aren’t understood. You see, I am lucky. I have a voice and use it. Often. But beyond that, I am heard. By my doctors, my friends, my family. Not totally understood and I get that. But they try. And it helps to know that they try. It means a lot too. So I write for others that maybe they can use my words as theirs and help their families and friends understand what it’s like to be us. What it’s really like.

So here is my recovery story. Unedited. No sugar coating. It is one day of PT. Physical Therapy. Today. With an awesome therapist I may add! (She’s trying to kill me, but she’s awesome!)

It always starts with the fun stuff: warming up the muscles, stretching. They lull you into a false sense of security with the hot towels and gentle movements of your arms and legs! But there’s always a catch. Soon she had me move to a high counter so she could “check my balance posture”. (Apparently code for “determine most difficult leg exercise on planet for patient”.) For me, this was side leg raises to the right with my knee facing FRONT. (As a former ballet dancer that knee position is sacrilegious.) It was also very difficult causing my hip to cramp up immediately. And my pelvis to drop. Which was key to my treatment plan.

You see, I fractured my back in December of 2015. Previously in July of 2014. But way before then, my disease started attacking the joint where my pelvis meets my spine on the right side as well as attacking my right hip joint. I never realized I started carrying myself differently then. So much so that my entire muscle structure on that side is gone. No wonder I am failing balance tests at Neuro appointments! your stability rests in your core and in your hips. I only have strong working muscles on my left side. I seriously wonder if this is why my right leg is the one being attacked by the “sudden bouts of muscle weakness” effect of my MCTD.

After the balance tests at the counter, my PT wants to test my hip muscles more on the therapy table. Lying side leg lifts. Good! An easy one. Great! I can’t do it. How can it be that someone who used to be able to raise her leg above her head, and still has half that flexibility, can’t lift her leg twelve inches off the table without shaking? Yet the left leg is so much easier! And my upper back muscles? They’re like completely turned off at the moment. But calves, quads, biceps, the major muscles? They all seem to be OK. And that’s the insidious nature of these diseases. There’s no rhyme or reason to them. They attack at will causing random patterns of disability you may not even realize you’ve developed.

At the end of the hour, I was completely exhausted. I had drunk an entire 32 oz bottle of water and my lungs decided to get in on the act and swell up a bit. (Sjogren’s can attack the lining of the lungs causing it to swell. For me, it’s occasionally during exercise.) The activity also triggered my trigeminal neuralgia. (Weird facial nerve headache.) My hips and sides were sore. All in one hour that is supposed to be helping me recoverfrom a fractured back and regain my stability. One hour.

But, I felt great. Because inside I know what I am up against. I know what I need to attack. And I know the cause of all the other issues that cropped up. Yeah, they are problematic and extremely annoying. And sometimes, I can’t work through them. But a lot of the time, I can. I have the tools. And the meds if I need them. And as frustrating as it is to work so little and pay so much right now, I have hope that soon, I will pay less. And if not, well, that’s the nature of my disease. It always has been. I won’t give up on these appointments or on making myself stronger. I can’t. I’ll just have to fight harder to get there.

And that’s how it is for all of us with chronic illnesses like this. What may be a small or easily recoverable injury for most will be much more difficult for us to overcome. We have to fight our disease as well as whatever issues the injury itself presents. But we’re strong. We’re warriors. We’re used to fighting.

About Me

Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. I have raised my kids, worked at my career for over 30 years, and have been a wife to her husband of 26 years while being diagnosed with an autoimmune disease for 21 of them. I currently writes from the heart about these experiences while wrangling our one rescue dog and three rescue cats.